Beers and Cheers

Recently we celebrated our 4 year Anniversary. A local newspaper covered the event and wrote a really nice article about all the things Ellie’s Hats does. Beers and Cheers article.

Young Ellie Whitfield was diagnosed with acute lymphoblastic leukemia in 2013; and by the time she started kindergarten at Woodburn Elementary, she’d lost her hair and was wearing hats to school every day. Her P.E. teacher, Jay Coakley, noticed how happy her hats made her, so he organized a hat drive for her.

Wanting to bring that same joy to other children suffering from cancer, as well as raise awareness of the disease, he then founded Ellie’s Hats, which collects and donates hats for them. Most come from hat drives from schools and groups, such as churches and Scouts — and in every state, plus Canada and South Africa, people knit and crochet hats for the organization.

Ellie’s Hats also helps their financially struggling families and contributes to the hospitals and clinics that treat pediatric cancer patients. So, it was with great joy that the nonprofit celebrated its fourth anniversary, Feb. 18, at Mustang Sally Brewing Co. in Chantilly.

Owner Sean Hunt met Coakley when he opened his business, and Ellie’s Hats was the first group for which Hunt held a fundraiser. “We’ve also had other events for them,” said Hunt. “It’s part of our culture, so doing this was a no-brainer. We see ourselves as a community brewery, so these relationships are what we opened the brewery to do.”

Among the celebrants were Christine and Mike Angles, who run an Allstate insurance agency in Chantilly. Two years ago, they looked for a nonprofit to get involved with locally and they chose Ellie’s Hats.

Similarly, Mary and Bryan Jewett, who own Casey’s Automotive in Chantilly, have been involved with Ellie’s Hats for 2 and a half years. They met Coakley when their children’s elementary school had a spring fling.

“And after talking to Jay about Ellie’s Hats, we thought it was such a great organization, we wanted to be a part of it,” said Bryan Jewett. “It’s a good opportunity to support someone who’s passionate about a wonderful cause. Last year, we did a car show for Ellie’s Hats and raised $4,000 through the entry fees, raffles and sales of T-shirts and hats.

“One hundred percent of the proceeds went to Ellie’s Hats, and we’re doing it again, April 22, from 12:39-3:30 p.m., at our shop in Chantilly,” added Mary Jewett. “It’s a 4260-A Entre Court, off Willard Road. All kinds of cool cars will be on display, and people dressed as Star Wars characters will be there, too. There’ll also be face painting, balloons and food trucks. It’s all free, but people can donate to Ellie’s Hats, if they want. We’ve also done hat drives for them.”

Her husband said they were happy to be at the anniversary celebration and “to see that Jay’s organization has been going strong for four years.”

More than 70 people attended the anniversary celebration, including some parents whose children have been helped by Ellie’s Hats. Sara and Marc Schweigert’s son Trevor, now 8, was diagnosed 4 and a half years ago with neuroblastoma.

“It’s been a long road, but he’s doing well,” said Marc Schweigert. “He’s been on six, different clinical trials, and one of the two at [Memorial] Sloan Kettering [Cancer Center] gave us hope that he was going to survive.”

“I met Jay at [Inova] Fairfax Hospital when our son was inpatient there,” said Sara Schweigert. “And when he knew we were going to the hospital [Sloan Kettering] in New York, he’d drop off a box of hats for Trevor to bring to his friends there. He’d also bring Trevor snacks and video games for the long drive, plus a gas gift card for us.”

And that was so special, she said. “It means so much for someone who doesn’t know us to want to help our family, when no one else understands the physical and emotional hardships we’re going through,” said Sara Schweigert. “It brings a sense of love and warmth to have someone else care like that.”

There, as well, were Jennifer and Robert Scott. They have three children, and their middle daughter, Elizabeth, now 17, was diagnosed with acute myeloid leukemia in May 2015. She was initially treated at Inova Fairfax and went into remission that August.

“But she needed a bone-marrow transplant to prevent a relapse,” said Jennifer. “We didn’t have a match, but Duke [University Hospital] had umbilical-cord blood that matched hers. So, on Oct. 2, 2015, she had a transplant there. She’s now 870 days post-transplant and doing well. She’s taking a full, academic load and looking at college and something in the medical profession as a career.”

The month before Elizabeth was diagnosed, her younger brother Michael was at his baseball team’s opening day and Coakley was collecting hats at an Ellie’s Hats booth there. A month later, said Jennifer Scott, “Jay – who’d heard about us through a mutual friend – reached out to us and was standing in our kitchen with hats and gift cards.”

“He recognized me and said, ‘I bet you never thought you’d see me again,’” said Robert Scott. “I’ll never forget that because I never knew we’d have a child with cancer and need his support.”

Jennifer Scott said Coakley was also a huge help while Elizabeth was hospitalized. “He’d show up with coffee, bottled water and friendship when we were stuck in the hospital in isolation because of different infections she had and for other reasons. It was a connection to the outside world.”

Jennifer Scott said they attended the anniversary event to thank Coakley and celebrate with him “for everything he’s done for these kids. It’s personal to him. So many people say, ‘What can I do to help?’ — and Jay shows up and does it.”

Pleased with how well the celebration went, Coakley said, “We had a great turnout, and it was a wonderful opportunity to spend some time with people who’ve done so much for Ellie’s Hats. There were sponsors, people who’ve made and/or donated hats, volunteers and families who’ve been affected by pediatric cancer. We’re now four years in, but it would be nice if we could just close up shop because we were no longer needed.”

 

2016 Impact

Ellie’s Hats does more than send hats to children battling cancer. In 2016 we started two new programs at Inova Children’s Hospital. The “Hero Bag” program and monthly dinners for the patients and families in the hospital. With your support we plan to continue to look for ways to help support families who have a child battling cancer in 2017. Would you like to be a part of this? Send an email to jay@ellieshats.org. #morethanjustahat Inova Children’s Hospital

A specialty license plate with a special goal

If all goes according to plan, hundreds of cars on Virginia’s roadways will soon display a special license plate with a small gold ribbon and a far bigger goal: to make passing motorists think about the wide-reaching impact of childhood cancer.

During the General Assembly session this month, Del. Thomas A. “Tag” Greason (R-Loudoun) will present a bill that would make specialty license plates, featuring the gold ribbon of childhood cancer awareness, available to all Virginia drivers. The bill marks the culmination of a project started by the family of Mathias Giordano, a cheerful and athletic Leesburg youth who was diagnosed with a form of bone cancer as a fifth-grader in 2012.

Soon after his diagnosis, Mathias had part of his leg amputated and began a grueling cycle of more than 20 chemotherapy courses. In the midst of Mathias’s treatment, the family bought a new car to take him to his many appointments and out-of-state surgeries.

When his mother, Roya Giordano, went to the Virginia Department of Motor Vehicles to get a new license plate for the car, she learned that there was no special plate to signify childhood cancer awareness.

“I requested the gold childhood cancer ribbon, and the gentleman behind the counter said, ‘I don’t know what you’re talking about,’ ” Giordano said. “He said they had the yellow one for the troops, and the pink one for breast cancer. But no ribbon for childhood cancer. I thought, that can’t be right.”

Mathias echoed that reaction when Giordano told him the news, she said.

“He said, ‘That can’t be right. Everyone knows what the pink ribbon stands for. We have to get the gold out there, Mom.’ ” She promised him they would.

Mathias died at home in December at age 13. Reeling from his loss, his family is even more determined to pursue an end to the illness that took his life. Compared with finding a cure, a license plate is a small step, Giordano said, but making people aware of the illness is critical.

“I knew about childhood cancer, but I didn’t really do anything about it before Mathias was diagnosed,” Giordano said. “It’s such a difficult and painful problem to contemplate.”

She noted that many families in Leesburg have been devastated by the illness, including the family of 10-year-old Gabriella Miller, who became a celebrated activist for cancer awareness and inspired a federal pediatric medical research bill after her death.

“I want to change the way people think about [cancer], not to scare people, but to make them aware that childhood cancer is not rare,” Giordano said. “It doesn’t help to ignore it.”

The lack of a childhood cancer specialty license plate grew from a complaint to a full-blown campaign after Giordano discussed the issue with Jay Coakley, the founder of Ellie’s Hats, a local nonprofit group that provides hats to children undergoing cancer treatment. Coakley investigated the process for creating a license plate and learned that the first step was to have a bill sponsored by a member of the Virginia General Assembly.

Coakley, a retired coach and physical education teacher, contacted Greason, one of Coakley’s former students, in August. Greason said he was happy to help.

“It dawned on me that I have so many people in my life, friends from high school, friends from college, friends in the neighborhood — it’s amazing how many people are unfortunately touched by childhood cancer,” Greason said. “It was an easy thing for me to try to get involved in.”

The next step was to collect 450 completed applications for the new plates, which cost $10 per year, Coakley said, with the revenue going to state. The money does not go to any cancer awareness or research organizations, a decision Coakley and Giordano made because they wanted the plate to be a cause that all cancer-focused organizations could rally behind.

“The main purpose of the license plate is to spread awareness,” Coakley said.

Within a couple of months, more than 700 applications had been sent in, Coakley said. About 200 came from the Leesburg area, Coakley said, and new applications arrive every day.

And the effort already seems to be spreading well beyond the commonwealth, he added.

“We’ve been contacted by New York, North Carolina, West Virginia, California,” he said. “All have contacted us because they would love to get a plate there. So we’re hoping that once our plates come out, as people drive from state to state, we’re hoping people will do like we did — they’ll call up their local DMV and ask about it.”

In a short video posted to the Team Mathias Facebook page, the Giordano family captured the moment when Greason presented Mathias with the bill that will be brought before the General Assembly.

In the clip, Mathias is curled up on a couch in a blue T-shirt, his head resting on a pillow as Greason shows him a design of the license plate.

“We’ll get this passed into law and signed, and it will always be known as ‘Mathias’s Law,’ ” Greason says. “What do you think about that?”

“That is awesome,” Mathias says, his voice faint but happy.

“Well, you’re awesome,” Greason tells the boy. “There are not many kids who actually have a law with their name on it that will live in the Code of Virginia forever, and you inspired us to do that.”

Mathias’s family is grateful that he had a chance to witness the campaign’s success, Roya Giordano said.

“I’m so glad and I’m so thankful that he did see the bill and that he was able to express his excitement and tell Tag that this was ‘epic,’ ” Giordano said, quoting Mathias’s first, overjoyed reaction to the legislation. “I think it’s going to have a real impact. . . . We wanted to make this a reality before he was gone.”

Fox 5 News Supporting the License Plate Initiative

We would like to thank FOX 5 News for supporting our efforts to get applications for the Cure Childhood Cancer License. This story ran 3 times on their station and they are posting about it on the Facebook page. Here is the link the video of the story. Fox 5 News. Link to the application.

WTOP News

Fairfax County teacher pushes for childhood cancer license plate to bring funding, awareness.

WASHINGTON — September is Child Cancer Awareness Month and during the month there is a push to get a special license plate that would help raise money to research childhood cancer. Seven kids die from cancer every day in the United States, according to a cancer information website, The Truth 365.While the war on childhood cancer rages on, one sad reality is that little money goes to research for pediatric cancer. Only 4 percent of the National Cancer Institute’s budget goes to kids cancer, The Truth 365 says. Now there is an effort to get a new license plate that would raise awareness about the fight for children’s lives. “The license plate, on the bottom is going to say ‘Cure Childhood Cancer,'” says Jay Coakley, a Fairfax County teacher, of the proposed license plate that would raise funds for childhood cancer research. Coakley, who started Ellie’s Hats — a non-profit that donates hats to kids with cancer, says “the most important part of the license plate is the gold cancer ribbon. Gold is the color for childhood cancer.”

Coakley is working to get the childhood cancer license plate approved in Virginia.

“The license plate would help bring a lot of awareness to everyone in the state of Virginia about childhood cancer. Awareness, hopefully equals actions which equals funding, which equals a cure,” Coakley says.

But the process for getting a “special interest” license plate approved requires some work.

“Long story short, we need 450 people to fill out an application and send a $10 check and in January we send it to the General Assembly,” he says.

The 450 pre-paid applications are required by Virginia law to get a new special license plate. Coakley says Virginia Delegate David Ramadan, R-South Riding, is on board to sponsor the new license plate legislation.

The application can be found at on the Ellie’s Hats website.

“Many of you might not know there is no license plate in the state of Virginia for childhood cancer. You can get one for breast cancer, you can get one for horse enthusiasts, you cannot get one for childhood cancer,” he says.

He say only about four or five state have childhood cancer licenses plates.

Raising money and awareness for childhood cancer is a cause that hits home for Coakley. He started his non-profit, Ellie’s Hats, after one of his kindergarten students, Ellie, began battling leukemia.

She’s now in the first grade.

Coakley, along with Roya Giordano of Team Mathias, are sponsoring the effort.

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Link to the story